Friday, September 20, 2013

A Day in the Life: Chapter Two

Yay! Chapter two is finally out! This chapter focuses on my "Work Life" as a (kindergarten) teacher. I really want to show others with CF, and especially parents to little ones with CF, that having a "normal" life is absolutely possible if you take care of yourself! I'm not saying I've always been the best at that, but once I moved away, went to college and met Tim, then things started looking up for me and that motivation started to come out to take care of myself.

I've always wanted to teach, and I was not going to let CF get in the way of that. Sure, I expose myself to their nasty, germy little bodies, but so what? In a weird way, it kind of motivates me to keep myself super healthy so that I'm not allowing their germs/colds to get me down. I do take precautions, like washing my hands, but I'm not a germ-a-phobe, so that probably helps. Have I been sneezed on by a student - more than once. Same with being coughed on and spit on (from talking, not anger!). I can't put myself in a bubble because I have CF. Teaching is so rewarding. I am impacting the life of a human being - encouraging them to grow, learn and become independent little people. Watching them grow and learn throughout the school year is an amazing thing. And the fact that I get to do that with a new group of 20-something kids every year is awesome!!
I'm just so happy that I pursued my dream of being an educator. Yes, having CF and teaching is sometimes difficult. I've been struggling with my weight since I started (teaching burns LOTS of calories!), and I've caught a couple colds, having to wake up extra early before work everyday to do treatments...but I've never let it get in the way of my job performance. Even if I'm tired, or extra mucusy for a day, I still go into my classroom and give those kids everything I've got because I'm there for them. This is the career path I chose, I wouldn't change it for the world, and I'm going to do it to the best of my ability for as long as I possibly can.

So for the parents out there with children with CF - don't keep them in a bubble. Show them how to take care of themselves and live a normal life, finding that balance is possible. Treat them like you would any other child. Encourage them to pursue their dreams. Don't let CF stop them from anything.

Thursday, September 19, 2013

Positive Thoughts Thursday

No matter what's going on in your life, there's always something positive you can find! I challenge you today to try to think of at least one positive thing going on in your life right now! Feel free to share below in the comments section. :)

  • I seriously have the best in-laws! :) We had our annual camping weekend this past weekend and it was so fun and relaxing, as always. We enjoyed each other's company, hung out, did some fishing (I even caught a fish!), cooked hot dogs over the fire, roasted s'mores...the whole nine yards. It's always a good time when we all get together.
  • I got my first refill call for Kalydeco yesterday. It's weird to think that I've been on it for three weeks now. And although I haven't noticed the "huge" change that some patients have within the first few weeks, I'm excited at the long-term effects this drug is going to have on my body. 
  • I'm so happy that it's been cooling off! Aside from today when it's supposed to be close to 90 again, it's been feeling like fall lately and I love it. We're planning a trip to an apple orchard with some family in a few weeks and I'm looking forward to that! The cool temperatures also make for a much happier and relaxed (and less stinky) teacher!!! I'd take 70 degrees any day - it's the perfect teaching temperature! :)
And finally, I saw this on pinterest and thought it was pretty funny: 
If only it was that easy!! But maybe, just maybe, it won't be as disgusting after being on K for a while!

Wednesday, September 11, 2013

How I'm Feeling

Today counts as day 13 of Kalydeco, can't believe tomorrow will be two weeks already. This morning I am FULL of mucus and my dixie cup is filling up quickly as I'm finishing up my treatments right now. I feel like I'm getting a lot of stuff up, but this morning it feels like it's really deep down in there and it's taking a lot of effort to get it out each time I cough - it's literally making me sweat!
Speaking of sweat, it's been unusually hot for this time of year and our school does not have air conditioning, so it's been super disgusting at work. Yesterday, we dismissed the students an hour early due to the heat, but today we're going back to a full day even though it's going to be the same temperature as yesterday. Yesterday I had a continuous headache throughout the day, but I really contribute that to the heat, not Kalydeco. Also, Monday and Tuesday, I had several very deep, mucusy coughs throughout the day. I feel like I'm really clearing my lungs over the past few days, more so than I was when I first started Kalydeco.

*Update from evening treatment - I had several deep, hard-to-get-up coughs this morning at work, but that definitely slowed down this afternoon. My bottom of my cup is just barely filled after my second treatment today, but that's not unusual for me.

Monday, September 9, 2013

Feel the Love

This weekend, Tim and I attended the wedding of our very good friends, Jessie & Jeremy. I have never seen more love and happiness between a couple, it was just amazing to sense their positive energy and love for each other on Saturday. I met Jessie when I was a junior in college, in the education program. I noticed that she was wearing a Great Strides shirt and thought to myself, "You don't wear a Great Strides shirt, unless you know someone with CF. I wonder how she knows about CF?" So I went right up to her and asked her about it and she told me that her boyfriend, Jeremy had CF. Since then, we've been great friends! It's amazing how much more there is to talk about with someone when CF is a common factor. Plus, it was so interesting to me to see the "CF spouse" side of things in their relationship.

While Jessie and I were doing our student teaching our senior year of college, we actually rented apartments in the same building, right across the hall from one another. It was awesome to be able to see her and Jeremy all the time and hang out! Jessie stood up in my wedding as a bridesmaid when I got married right after we graduated college, and then of course we both went our separate ways to become teachers. Throughout the years after college, we kept in touch and saw each other not as much as we'd like to, but that's what happens in life. I was so excited when I found out they were engaged!

Jessie and Jeremy have been through some hard times together since sometimes Jeremy isn't in the best of health, but she loves him to death and sticks by his side anytime he has to go into the hospital for a tune-up, or is just having a rough day. Jeremy is a great guy and the way he adoringly looks at Jessie is just the sweetest thing I've ever seen. The same was true at their wedding this weekend. Jeremy is currently on oxygen 24/7, but that didn't stop him from dancing with his beautiful bride (MUCH better than many couples during their first dance), and Jessie was right there with him all night to help him out if he needed anything. Seriously, the love between these two is amazing. Here are a couple cute pictures from the night:

Jeremy saying his vows
Jessie saying her vows
Ring vows they said together - absolutely adorable!
First dance!

Sunday, September 8, 2013

Kalydeco Days 5 - 10

Day 5 (Tuesday): I'm still not noticing too much of a change, and I know it's still pretty early. I feel like I'm coughing the same amount that I typically do, although usually when I cough now it's productive instead of just a 'throat-clearing' cough. That's about it. :-)

Day 6 (Wednesday): I noticed today that I was interrupted a couple times during my teaching to cough, and I found myself clearing my throat more often. Not a fan of coughing while teaching because it's usually productive and I have to swallow it, but at least I know things are still moving in there.

Day 7 (Thursday) - Day 10 (Sunday): Thursday evening I had another blood-in-mucus problem, so I laid off of my hypertonic saline Friday morning so I didn't irritate my lungs anymore and my mucus was back to normal (no blood) by my evening treatment on Friday. Since then though, I've been coughing up a lot of nasty stuff. :) This morning and throughout today, my mucus has been a grayish-greenish color so I think I'm getting up a lot of older junk that's been down there a while.
And, if you want me to be completely honest, I have to tell you the best part which is probably way too much information: Tim and I went out of town for the weekend for our friends' wedding (I'll post about that later) and on the way in the car, I farted. As Tim reached to roll down the window, I said, "Wait, I don't smell anything!" Of course he didn't believe me, so like a bunch of weirdos, we sat and waited another minute to verify. Believe it or not, there was no smell! I said to Tim, "If my farts don't stink anymore, Kalydeco really is a miracle!" (If you don't know me, or any other person with CF, you're probably wondering why on Earth I would share this on my blog, but you don't understand how amazing this is!) Later in the car, the same thing happened and I said, "It really IS a miracle!" Haha!
I wouldn't say that my gas has decreased (anymore from when it did when I started taking Probiotics - the other miracle), but the fact that they don't smell is just amazing to me! We'll see if it keeps up, or if it was just a fluke for the day, but even if it helps a little, I'll definitely be a happier lady! :)

Thursday, September 5, 2013

Positive Thoughts Thursday: K, Tim and Cysters & Fibros

To start off this blog today, I googled "thankful quotes" and these caught my eye:

"I'm thankful for laughter, except when milk comes out of my nose." ~Woody Allen

"Some people are always grumbling that roses have thorns; I am thankful that thorns have roses." ~Alphonse Karr

"I'm thankful to be breathing, on this side of the grass. Whatever comes, comes." ~Ron Perlman
  • I'm so happy, and lucky, to be able to say that I've been on Kalydeco for a week now! I'm still journaling how I've been feeling day to day, but I'll post several days at a time now instead of one each day, just because the changes are so minor. Overall, I'm not feeling too different from before I started except for the random rattly chest & thick mucus fits/moments throughout my day. And I really do mean random - they come out of no where!
  • I'm so thankful today, and everyday, for an amazing, hard-working husband! Since we bought our house a little over a month ago, he has been working so hard on it! Yes, I try to help him with projects, but home improvement isn't really 'my thing'. I'm the 'deal with the people' & accountant of our relationship, haha! 
  • I love having access to the internet. I have met so many amazing people through the online CF community, I consider some of them to be my friends although we've never met in person. It's such an amazing experience to be able to talk and get to know someone who understands what you're going through, when you would have probably never have met that person if it wasn't for the internet. :-)

Monday, September 2, 2013

Kalydeco: Day 4 & Home Ownership

There's not much to report today. I actually feel quite normal. Every once in a while my chest gets rattly and I'll cough out some thick, green mucus, but other than that I'm not feeling much of a difference. I'm really hoping it'll help me get back to a healthier weight, as well as help my lung function. I feel like I've been eating more the past few days because I'm making sure I'm getting the proper amount of fat with the Kalydeco, so I hope that weight starts to stick.

In other news, I've been super busy with the beginning of the school year. This past week we actually ended up having early dismissal, an hour earlier than usual, because of the extreme heat and lack of air conditioning at our school. It was really disgusting and I probably lost a pound or two just in sweat over the few days! I did pretty good about keeping myself hydrated though, and I drank plenty of Gatorade each day while at work.

On Saturday, Tim and I had our housewarming party with a lot of his family, my parents, and friends. It was so fun to get everyone together at our house this time! And I'm SUPER happy because Tim's sister, her husband and their two sons have finally moved back to Illinois! They're now only an hour away, so I'm really hoping that means we'll get to see them much more often.

Today, Tim and I spent the entire afternoon, about four hours, doing more landscaping in our front yard and along the side of the house. I'm really proud of the amount of work that we got accomplished together today and I love the way it looks -- there's something different, and way better, about doing work on a house you own! Tim also has been working his butt off the last few weeks to update our bathroom. We finished just in time for our party on Saturday....literally, just in time - we painted it on Friday night! :)
This is what our house looked like when we bought it.

A few weeks ago we ripped out all of the weeds & bushes and
replanted new plants. We also got all of the plants on the steps
from our brother-in-law after the Farm Progress Show was over.
This is what it looked like when we started today.
This is what it looks like after we finished for today. We dug up the
grass and laid pavers all along the front and side of the house.
The we arranged the plants where we'd like to plant them. We'll
also be adding some mulch after we plant everything.

Here's what the bathroom looked like
when we purchased our home.
Here's what it looks like today! :) New tile floor,
new tile around shower, new window & paint.

Sunday, September 1, 2013

Kalydeco: Day 3

Today I haven't felt much of a difference than I usually feel from day to day. I have noticed that I'm still coughing, but it's not all day long (and it hasn't been since I've started K). The coughing comes in spurts throughout the day (I've noticed it the most a couple hours after I do my morning treatment) and when it comes, it's lots of thick, sticky and green gobs coming out. There was only one gob that came out today that had tiny specks of red, so I'm glad that's getting better. I'll go back to doing my full HTS neb tomorrow with my morning treatment.
Today's evening dose posed a new problem thing to keep in the back of my mind all the time because I've never had to take a regular evening medication (aside from Cipro). Tim and I hopped in the car around 6:15 to head to Menards and as we turned down the first block after our house, I said to Tim, "Oh no, we better be home by 7:00 because I have to take my Kalydeco then." Well, we both knew that wasn't going to happen because Menards is about 15 minutes away and that would leave us 20 minutes to shop - no way! So I decided to just go back around the block to head home and grab it. On the way back to our house I asked Tim to check my purse to see if I already had a protein bar in there, or if I should grab that out of the house, too. He found one in my purse and told me it was 12 grams of fat - perfect! When we got back home, I ran in and grabbed the bottle of Kalydeco and back off to Mendards we went. I felt a little weird eating a protein bar while walking through the store, but whatever. I think I'm going to have to keep my purse well-stocked with protein bars and/or peanuts. And also a cyster recommended keeping two extra pills in my purse for occasions just like this - great idea!

**And finally, I wanted to share a link to this great article from Discover magazine that the Cystic Fibrosis Foundation sent me the link to - it's an awesome, informative read! It discusses how/when scientists discovered the CFTR gene in the 1980s and how cystic fibrosis research has progressed since then. It's amazing to learn how much they've been working on creating medications like Kalydeco and how it's all been funded throughout the years. It makes me appreciate the jobs of researches & scientists, and everyone's fundraising efforts even more!!!

*Oh yeah, and I forgot to add that I've had a slight headache today, off and on. I've also been having some stomach pains and bloating today - that could be due to the amount of not-the-healthiest food I've been eating yesterday and today, so we'll see how that goes tomorrow.